Holiday ornaments bring warmth to your heart

Weatherd Silo was created by my beautiful sister Mandy Behrens to bring back the "old ways' of living to our current times.  She is a gifted artist, dedicated to eco-friendly products that are beautiful and inspiring.

Here is a link to her etsy shop. Her handcrafted ornaments are unlike any others.  They make wonderful gifts for this holiday season.

http://www.etsy.com/shop/weatheredsilo

Normally I don't promote businesses on my site, but these are georgous.  More importantly, made by my sister.  My sister is a rock for me.  She is truly a beautiful person, inside and out. 

Yesterday I was graced with the opportunity to see my niece perform in a school assembly honoring our Veterans.  My niece sang like a lark, and it was just so fun to see all the lovely children singing and laughing.
My sister seemed so happy.

It made me wonder how my life would have been different if I could/would have had children.  I think I would have been a loving patient mom, but also nervous as heck.  I would probably be the true helicopter mom, never knowing when to let things be and run their course.

If some guy ever finds me attractive, compatable and interesting, maybe I'll get married.  I would love to marry someone who already had small children.  In case you hadn't read my whole story, I was told not to have children when I was 17 or 18.

My juvenile rheumatoid arthritis was so bad back then I couldn't even write, let alone carry a baby or raise a child.  So I never planned on a family.  That was a very depressing area of my life.

But now I can relish in the joy of my nieces and nephew for as long as God allows me to live.

I hope to send a post tomorrow about my visit with the Lance Armstrong survivor program today.  I am a little overwhelmed because I'm stuck, don't know how to envision my life.  When you don't know how long you have to live, your priorities line up well, but your resources may not.

So after probably confusing you, at the end of the day it was a great visit.  We do have a plan of action and I think I can manage it.  I'll fill you in on the next post.

God Bless and
Be Love

My hands, something different to talk about

Today I went for an evaluation by an Occupational Hand Therapist, to evaluate the need for hand splints.  The scheduler was kind enough to call my insurance company to verify that they pay part of the visit.  I don't think they cover prosthetic/splints though. 

Both wrists have worn away, have little range of motion, and limit my function.  My right (dominant) hand and wrist are worse than the left, more pain, less range and more ulnar deviation.  Ulnar deviation is where your fingers drift towards your pinky.  When this deformity becomes permanent, it's almost impossible to do simple daily tasks, (like buttoning a shirt, hold a glass, cut food). 

She measured me for splints to wear at night.  I told her I was needing to keep the expense down, and she agreed to order pre-fabricated splints as opposed to custom made splints.  We will start with just one splint for the right hand, and then progress to the left hand if all goes well on the right side.  If I ordered them myself , they'd cost around $50.  Let's see what the cost comes out to be once the facility tacks on their fees.

I mention this only because several years ago I was placed on home neck traction therapy due to slipped disc (car accident).  It was ridiculous because I had to spend several thousand dollars in CT scans and MRI, and see a neurosurgeon for them to finally figure out the right treatment.

Good God, I was in so much pain, it made me cry just to wash my hair.  So I did traction 5 times a day for a month.  Since I needed a second traction machine, (so I could use it on breaks at work), I ordered the second one online for $29.99.  The hospital charged me over $200 for the same thing!  I was peeved at the difference in charge to me.

Anyway, it was worth it.  After several months of home traction, my neck pain went away and has not returned.  I saved them in case my neck pain ever returns.

Today I'll take a guess and say that the OT clinic/facility will charge me $300 for the splint.  Let's hope I'm wrong, but I bet I'm not too far off.  I almost asked her if I could order it myself, I wish I would have now.  The OT was super nice and professional, which was a plus for me.

Well, I'm grateful for the opportunity to get an OT eval, so in the end it's all good. 

God Bless and Be Love

My foreign bodies

It was nice today to speak with a surgical nurse about the "metal' in my body today.  Either I didn't hear my surgeon correctly or the subject was glossed over during the surgical consult, way back when.

The nurse said that in a typical total abdominal hysterectomy with optimal debulking, plus my appendix removal, it would not be out of the norm to have "clips" and sutures that will forever take up residence in your abdominal cavity.  She explained that although each patient is different, the basic surgery is the same for most women.  She had not seen my dexa-scan, so she could not comment directly.

So to close the book on this issue, I am going to request an actual copy of the film and radiology report.  Then contact the surgeon's office in California and ask them to explain the remaining clips, etc.  It''s for my own piece of mind, plus I really want to know what is in my body.

Part of me ws hoping that this foreign material might be partly at cause for this ongoing upper abdominal pain.  Then I could inquire about it's removal, but the nurse said that these clips and sutures rarely cause pain or discomfort.

Looking forward to Zenyatta's final race before her retirement.  She runs Sat at 3:15 pm PDT. Wow, lot's of pressure for this beautiful horse.  I love to watch her run because for 1-2 minutes I am only thinking of her.  I totally and completely forget about "me" and my worries.  Thank you God for Zenyatta!

Be Love and God Bless 

last day of antibiotic

It was such a beautiful day in Seattle!  I was out of the house for the first time in almost a week.  I have been sick with either bronchitis or pheumonia (based on med prescribed).  Either way, I have been coughing up a storm, and flat out wiped out.  My WBCs are low end of normal, so I always get nervous when I get sick.   Thank God I am on the mend.

Unfortunately poor mom is sick too, but getting a little better each day.  I feel really bad for giving her this junk. Hopefully we will have had our share of cold/flu for the fall and winter with this recent confinement.

Missed Halloween with my nieces, such a drag!  They dressed up as the "Ghosts of Laura Ingalls".  I was totally creeped out when I saw their photo, Mandy (sister) did such a great job with their costumes and the girls did just as well with their poses during the photo.  Don't they look great?

I'm getting ready to meet next week with the Livestrong representative at SCCA.  I have filled out a survey, which took over 2 hours to complete.  It was very detailed and asked a lot about my emotions.  I hope they don't toss me in the local psyche ward............ha.

I am constantly worried about recurrence, and something needs to be done about that. 

I just hope to get some good exercise this week, as I feel really floppy and tired.  My antibiotics made it hard to fall asleep, been falling asleep at 4am each day for almost a week now.  That is definitely a problem that I need to make go away.  I've been sleeping past nooooooon each day.  Bad.

Had a bone scan today and the technician goes "have you had any abdominal surgery?"  I gave him my history and then said "why?".  He goes, "well there's something on your exray that looks like a big clip or a bunch of staples, like it was left there intentionally".

I'm fairly sure my gynocology-oncology surgeon in California said that all staples from my debulking/total hysterectomy would melt away.  Huh?  So now I have to ask my current gynoc to look at the image and tell me what the heck it is.  I should be aware of all foreign bodies remaining inside of me..............

You never know what will come from each day.

God Bless and Be Love

Keeping the train on the tracks

Funny how each day brings a truly different perspective.  First and foremost I must re-state that I truly love my doctors, the cancer center and am grateful to even have insurance.  I say this because I'm about to complain about healthcare costs.  I would never want anyone who cares for me to take this personally................

So I'm about to move into the poor farm, unless I can make a miracle happen, and I got the most ridiculous pharmacy charge of recent months.  I have been fighting this upper respiratory problem, and because of my weak immune system.  I was handling things fairly OK with over the counter meds, but today it was much worse.  It's been about a week of this, so as a precaution, I called my hematologist to see how my neutrophils were at last draw (which was a week ago).  By the way, I'm certain I picked up this bug visiting my rheumatologist who's office is in the hospital!

Anyway, they did a lab draw today, and prescribed an antibiotic as a precaution.  They did the right thing and I am grateful.  I don't need pneumonia. What I'm not really joyful over is the prescription charge.  Whatever!

My portion was just under $230........................for 7 pills.  My insurance did pay $50, so the actual price was $280.  That is $40 per pill!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  All I can say now is that they better work.  Geeze.

Now compared to a potential hospital stay, that's nothing, but still, yikes.  One prescription zapped roughly 40% (in my head math) of my income.

I am supposed to meet with the Lance Armstrong Survivorship program on Friday, but they may need me to move it out a week or so because the cancer center has real strict infection control. 

Now, part of the reason I'm meeting with them is to spend some time with the social worker to get my resources strengthened.  In other words, how can I make more money and what programs will help me with the cost of healthcare.

In other other words I just spent $230 to stave off potential hospitalization, but will delay a very important meeting that I need so that I don't have to completely lose my mind over a lousy couple hundred bucks.  The next time I see any doctor in the hospital, I'm wearing a mask.

I remember when I got my first paycheck as an OT, and I was astounded that I could earn over $700 per week, back in 1989.  After losing my lucrative income (long story about RA), I went down practically nothing, and it took me until 2009 to earn the exact same amount I earned in 1989.  It took me 20 years to get back to square one. Maybe I should have went on disability in 1995 when I was first really disabled.  I just didn't want to be "one of those people".  So I struggled to get back to a decent level.......

Then I got cancer.

I now own what would fit in my car as my brother drove it to Seattle for me.  I also own what would fit in a suitcase as my sister travelled with me here from California.  I can kind of relate to fire victims, but not in total, they had no choice on what to lose or keep.

See what they started.  I hate the feeling of being impoverished, which means I still have a lot to do in the spiritual department.  It's not that I want to have everything, I just don't want nothing.

I would be the happiest woman on earth if I had a clean studio apartment in a safe neighborhood, and the basics.  That's all.  I want to live near my mom and sister and feel like a regular person.

I make a bad interviewee right now too.  I look 60 years old and can't do basic math on paper  (funny ha ha).  Literally though, I'm slow to think and can't remember some things.  It's like I had a small stroke or something, I can't always put correct words to what I remember in my mind, or I've just blanked out the event completely.  Who wants to hire someone like that???  I know once I get back in the groove of some form of "work", I'll improve some because of the environment and challenge.

What matters most is that you love and be loved.  I just pray each day for tiny miracles to keep the train moving on the tracks.

I want to work in a church so I can be close to God all the time.

Be love and God Bless

New Clues to Ovarian Cancer, Pt. 3

New research is shedding light on how to prevent this silent cancer. Learn how early detection can save your life. Become aware of the symptoms so...

New Clues to Ovarian Cancer, Pt. 1

New research is shedding light on how to prevent this silent cancer. Learn how early detection can save your life. Become aware of the symptoms so...

Everything still seems hard

Hi.  Today I'm fighting a silly cold, so I have no energy. 

My good news is that my CA125 is 7.  Hip Hip Hoooray.  I still fight fatigue and abdominal problems, but feel more confident that I have some time to rebuild some assemblance of a life.

My worries right now have moved into the financial and insurance arena.  My income is a little over $600 per month.  It doesn't even cover my basic expenses, so I am walking on a tightrope.

I have not yet heard back from the Dept of Voc Rehab.  I have not applied for SSI, maybe I should.

I just need a good paying part time job to see if I can really handle working again. 

I just don't know if I can work.  My eating is so regimented now because of my abdominal problems and my fatigue is so unpredictable, I can't see an employer tolerating all my special needs.  I still have lots of medical appointments.  Next week I have three, a bone density test, eye appointment and meeting with Livestrong.

I feel like a total loser right now because of the work issue.  I just want to work from home.  I have enough in savings to go another month, then something drastic will need to happen.

I hope I don't look like a baby.  For example. I got this cold right after I went to the hospital to see my rheumatologist.  I have a weak immune system and probably caught the bug just being out in public.

That's my worry.  I really am homebound for the most part, even though I am NED.  I live on a roller coaster.  For example, after I heard my CA125 was 7, for a brief moment I felt on top of the world, ready to embrace each breath with a new level of excitation, living like I've never lived before.

Then I woke up with a sinus problem and have no energy to do anything.  How can I work if my body is still so fragile?  The answers will come.  I am willing to work, don't get me wrong, I just don't know what I can do anymore.

Another OC sister passed away this week.  That makes three in the last month, from my support group.  It is so sad.  Most of the sisters have experienced recurrences, and it scares me.  But I need my group, they understand me.  I love them all.

Be love and God Bless

Doctor, radiology and labs today for fun, CA 125 done

It was one of those clinic days for me today.  I had the opportunity to deal with both RA and ovarian cancer maintenance, spending most of the day at the hospital.

Actually it was great to revisit my rheumatologist, as she just returned from maternity leave.  She spent good quality time with me.  I received new xrays of hands and feet, bone density scan ordered, OT ordered to get a splint for my ulnar deviation.  I wonder how much radiation I will have received in the past 18 months, too much probably.

Had port flushed and labs drawn.  For some reason my oncologist ordered another CA 125.  I just had one a month ago, and it was 10.  I forgot if they were going to draw it once per month or every 3 months.  Chemo brain again.

I painted my finger and toe nails teal.  Everyone loves the color and it is a great conversation starter for ovarian cancer awareness.  It really is.  Plus, everyone has liked the "blue" coloring.  I'm happy that I have taken this step to be an advocate, at least in a subtle way.

I want to do more, but have no resources.  I'm teetering on a few ideas, but have not really settled yet.  I am still walking in a bit of limbo, uncertain of the course of my cancer, decision-making has been a chore.  But it's getting better.

Need to apply for SSI this week, money is running out.  Have not heard from voc rehab yet, hope they tell me soon if they can help me or not. 

This is the point where having a rich husband would come in handy, ha......oh well.

Be Love and God Bless

God Bless Fightgirlandi The Dash

This poem was posted or written by a woman in my online ovarian cancer support  group.  Her online name is "Fightgirlandi".  She was diagnosed with OC in August 2009 and passed away a few days ago.  I am posting her poem to help all of us who are graced with the ability to breathe fresh air today.  We are gifted with life for now and maybe we can find a way to make our lives better for those around us. 

God Bless you Andi.

The Dash

• By fightgirlandi

• Posted January 27, 2010 at 9:41 am •

• Shared with the public

I read of a man who stood to speak,

At the funeral of a friend.

He referred to the dates on her tombstone

From beginning to the end.

He noted that first came the date of her birth

And spoke the following with tears.

But he said what mattered most of all,

Was the dash in between tho---se years.

For the dash represents, all the time

That she spent alive on earth.

And how only those who loved her

Know what that little line is worth.

For it matters not, how much we own;

The cars, the house, the cash,

What matters most is how we live and love

And how we spend our dash.

So think about this long and hard.

Are there things you'd like to change?

For you never know how much time is left,

That can still be rearranged.

If we could just slow down enough,

To consider what is true and real.

And always try to understand,

The way other people feel.

And be less quick to anger,

And show appreciation more,

And love the people in our lives

Like we've never loved before.

If we treat each other with respect,

And more often wear a smile

Remembering that this special dash

Might only last a little while.

So, when your eulogy is being read,

With your life's actions to rehash

Would you be proud of the things they say

And how your spent your dash?

Faces of Ovarian Cancer

I used to be the focus queen

Yesterday I was so proud, I was able to drive to the eye doctor without getting lost!  For me this is major.  I still get nervous driving in new areas and Seattle's downtown is a maze.

The eye doctor said my eyes are healing well and now all I need to do is continue Restasis and an over the counter cream.  My prednisone and methotrexate have helped tremendously, so now the next step is new glasses.

I still get nystagmus periodically and my eyes will blur with prolonged computer use. No biggie though, just super happy to see.

Today was a day to be grateful for sure.  Crisp autumn air, blue skies, sunshine..............wow what a beautiful day.  Had a moment on the phone with my sister, which is always a treat.  Spent some time online doing more Ovarian cancer research.

I found out from a medical presentation sent to me by one of my OC sisters that the best predictor for survival rate in the cases of advanced OC (stage III/IV) is the success of the initial surgery.

I still only have 20% 5 year survival rate, but it's "better" because my surgeon was able to optimally debulk me. 

I feel stuck, like I'm in between two worlds.  I need to take advantage of this "remission" to the best of my ability, but prepare for recurrence.  It's hard, I feel like nobody understands.

Next week I meet with Survivorship counselor from Lance Armstrong foundation, to help me with these issues.  By then I hope to have some word on Voc Rehab too.

I want to go away sometimes, just take a vacation.  But I can't tolerate the travelling yet, not to mention no money.  But I do hope to travel while I can.  I say that not to be trivial, just that I need to make a bucket list.  Everyone needs a bucket list..........................everyone needs to make sure they get to do some things that make them feel pure pleasure and joy.

God did not grace me with a husband or children, so I do feel empty.  I doubt I'll ever marry now, given my health situation.  So I am seeking something to nurture, besides myself.  That's why having an empty job seems to me that it would speed up my death rate.  I'm not independently wealthy, so I can't just "volunteer" like I'd like.  Not sure about social security income being enough AND my insurance rates skyrocketed.

I know this sounds boring to some, but to me, every thing I do takes extra effort.  Sometimes it takes me half the day just to pay a few bills, I get distracted, or unfocused.  I was never like that.  I was the "focus" queen.  I could be counted on to get things done.  Now, I don't know.

I do believe though that when I will be presented with the challenges in the future, I will have more determination. 

I'm still really forgetful, which bothers me.  I hope that goes away.

Be Love and God Bless

work ever?

Today I met with an intake specialist at Voc Rehab.  My hope is that I will qualify for training and assistance with finding a job/new career.  I have a lot of barriers, but also a lot of will.  My biggest goal is to spend my life doing meaningful purposeful activity that helps others and provides me a modest sustainable income.  I want to work from home because I have so many medical issues with my abdomen, nausea, fatigue and arthritis.  I also want a home based career in case I do have a recurrence.

I am doing everything I can to be proactive and a good planner.  If I have a home based career, I can manage my tasks and projects around my medical appointments and health problems.  God forbid, but if cancer returns, I would have freedom to do some things from home while on chemo, if able INSTEAD of possibly losing my job completely due to extensive time off. 

Only employers with 50 or more employees are required to honor Family Medical Leave Act.  I just don't want to work in an office with lots of people playing office politics. I have no desire to "climb the corporate ladder".  I don't even know if I'll be alive in two years.  Nobody knows how long they will live, so why waste your precious life working for someone who dislikes you or hurts you somehow.

Plus, I have a weak immune system, so I don't want to be around a lot of people, I just don't. 

I can't take those kinds of risks.  Negative environments and high stress can aggravate cancer, I don't want any remnants of cancer to be aggravated in my body.  I believe I have every right to find the optimum work situation.  At least I'm going to try my best, that's all I can do.

I don't want to be a government burden, and I don't want to live in "the projects".  Mom and I cannot live together forever, and she needs her life back.  It has been 5 years since I have been able to live in an apartment because of poor finances.

One of my wishes before the Lord takes me is that I can at least have a studio apartment in a safe neighborhood, and feel some sense of dignity.  Am I being selfish?  I need space to re-grow, re-birth, re-ignite my senses.  I want to be a positive influence for my family, not a drag.

I don't know, all I can say is that I am doing the best I can do.

Be Love

Understanding Ovarian Cancer

Update from Oncologist

I met with Dr. Gray today, what a joy.  She shared good news, and I am relieved.  I am still NED and my CA125 is now 10. She said the CT scan showed no new tumors and looked good, so I am relieved.  Recurrence is my biggest fear.

I talked with her about my lingering issues with abdominal pain, fatigue, nystagmus, vomiting etc.  She reinforced that the body can take up to a year to heal from the chemotherapy and surgery.  But overall, I am improving.  I see the Oncologist again in three months.

I need to watch my food intake probably forever, being careful with fiber.  Haven't decided on an allergy test yet, but will just avoid peanuts for now at all costs.

This good news frees my mind and helps me to be more hopeful for the future.  I meet with Dept of Vocational Rehabilitation in a few weeks and need to see if I qualify for any of their services.  I can earn some money in addition to the small disability income I currently receive.  If it is at all possible, my dream would be to have a part time job that is homebased, in advocacy or some form of computer work that has a mild training program.

So off I go to the next step while I continue to rebuild my strength, endurance and digestive health.  Thank you God for blessing me with my mom, sister,brother-in-law, brother, aunts, and uncles who have been so supportive.  Thank you God for giving me friends who have offered laughs, kind words and support from day one.  Thank you God for blessing me with an amazing health team here in Seattle.  God Bless everyone who has touched my life.

Be Love

Update on Breast Health

Today I went in for my mammogram and breast ultrasound.  The nurse practitioner had recommended the ultrasound due to her locating some enlarged dense tissue on my right breast.  Well hallalua and thanks Be to God, no lumps or abnormal tissue was detected today.

Because I am BRCA 1 mutation positive, I need to see the NP in three months for a follow up breast exam, just so she can determine if the area changes ins shape or size.

WHEW!

If I must have a mastectomy, I will have one.  But for now, since the monitoring is going well, it is so so nice not to have to be so worried about breast cancer.  I have enough to worry about with ovarian cancer recurrance rate issues.

So thank you all for your prayers.  Thank you God for watching over me and giving me something to smile about. 

Be Love and God Bless!

Qigong and update

I am really pleased with the Qigong dvd I rented from netflix.  Giam sells this dvd, and I decided that I need to buy it, as an investment in my health.  My internal organs are so screwed up, so touchy, and unpredictable, that I am frozen sometimes unable to leave the house.

Qigong is a series of ancient Chinese postures and movement patterns that help to energize and release your bodies negative energies ( so far as I know).  I have done the exercises a couple of times, and feel more balanced for a bit of time.  It was suggested by one of my OVC sisters to try Qigong, and this seems to be a good fit for me. I am grateful for my OVC sisters.

Had my pelvic CT scan, bloodwork, and breast exam last Thursday.  LONG day.  Reminder, I'm also BRCA1 mutation positive, so I also have 6 month checkups.  Next week I have breast ultrasound and mammogram and also a meeting with my gyno-oncologist.  I've never had anyone give me a breast work-up like that before.  Pulling, poking, stretching, pinching, pushing, rolling...my gosh.  The good news is she found no "lumps" but did find some abnormal dense tissue on the right wall of my right breast, hence the ultrasound.

I am praying for clear pelvic CT and good CA 125/bloodwork.  I will also be praying for a normal mammogram and ultrasound.

I just set up a future appointment with the state Voc Rehab center.  I need to earn more than $600 per month to get my own place.  So I need to find a part time job that pays fairly well and try to focus on what my future can be. 

For now my mom is so gracious and allows me to stay with her, but she needs her space.  She needs a life, so as long as I am not on chemo, I should be striving for a more independent and meaningful life.

I still sleep 12 hours per day though.  I wish I knew why.  Am I still depressed or is that side effects of all my meds????  Not sure, but I must return to a more reasonable sleep-wake pattern.  Maybe I need help.  I don't know, I just have to try harder to get up earlier.

Wish me luck on all my test results.  Love you all.  Be Love and God Bless YOU 

Experimental drug shrinks tumours in women with hereditary breast and ovarian cancers : Cancer Research UK

Experimental drug shrinks tumours in women with hereditary breast and ovarian cancers : Cancer Research UK

battling with peanuts

On Sunday evening I was happy to have an opportunity to house sit and watch Paul, my sister and her family's kitty.  He's a gem, real bright and fun, it's something I enjoy.

After 7pm mass, I went over to their house and was greeted with tremendous enthusiasm because I had let him out earlier to play.  He was ready for warmth and food.  I settled in and fed him dinner anticipating a fairly relaxing night in.

I was hungry for a tiny snack, so I grabbed a small handful (10 pieces) of Puffin cereal to have with my tea.  I was tired by 11pm, and was probably asleep by 11:30.  At midnight I was awakened with terrible tummy pain and found myself hurling into the trash can.  That, along with other unpleasantries lasted until almost 4am. 

I was dumbfounded because I couldn't figure it out.  Well, in the morning I took another look at the cereal box and it had the words "peanut butter" blasted across the front of the box, and I missed it.  I haven't really been paying attention like I should and now realize I must be an avid label reader.

Today is Wednesday, and I am finally having some oatmeal.  I've had terrible headaches, down to 104 lbs, waist now 28.5.  Mom's at the store and offered to get some chicken noodle soup.

The nurse at the SCCA said it can take a full week for your digestive tract to get back to normal after server episodes of vomiting and diahrea, because they stay slightly inflamed for a while.  So I am slowly integrating food and rehydrating. 

This totally blew my little holiday weekend.  I had wanted to stick around to see how Mandy's trip was at Ocean Shores.  Haven't had a chance to talk to her.  Today was the first day back to school for my nieces, so hopefully I'll get to learn how their day went later.

Anyway, Paul was so sweet, and napped with me the whole time, which helped me feel better.

To better days.

Be Love

lunch with mom

Yesterday I had a wonderful time with mom.  I wore my teal T-shirt, and we walked a few blocks to a little restaurant for a late lunch.  It was sunny and fresh outside, a rare treat for Seattle.

It was so nice to sit outside and laugh, enjoy goat cheese pizza and an iced tea.  Events like this are enormous jumps in recovery for me because my abdomen will never be normal again.  The food was good and I had no pain, such a relief.  Such a joy.  I thank God for giving me the opportunity to enjoy the simple pleasure of lunch with mom.

Waist still 29"

God Bless and Be Love

Tomorrow wear Teal

Today I wanted to remind you all that tomorrow is national wear Teal Day in support of Ovarian Cancer Awareness Month.  Do you have anything teal?

I went to the dermatologist today for a skin check up.  Thanks be to God all my freckles and moles are of no concern at this time.  Yay!  I am so relieved that I went because once you have cancer, you tend to be hyper-aware of potential sources of cancer in other areas of your body.  I was instructed on how to monitor my own skin, and contact them if I noticed a problem.  What a relief.

Last night I had nightmares that I was bleeding internally.  Probably all weird because I had watched the movie "The Lovely Bones" with my mom that evening.  It was surreal, creepy, but had a strange sweetness to it.  I makes you face death and confront your views on the here-after.  I'd recommend it.

Since it has been such a beautiful day here in Seattle, I have been so happy today.  I love it when the sun shines.  You can see the harbor much more clearly and people seem more content.

When I was on chemo, I remember feeling literally "afraid" of everyone.  Almost paranoid.  I would take extra measures to lock my car doors when driving, and saw everything as a threat.  I don't feel that gloomy fear anymore, thank God.  I just wish we could be graced with the sun a little longer.

My waist is 29 today.

Be Love.

First day of OVC Awareness Month

Have spent most of the day online responding to women asking for help on the "inspire" blog sponsored by the National Ovarian Cancer Alliance.

I am going to daily/regular measurements my waist just under my rib.  Today I am at 30" (35-30-35) to be exact.  I want to monitor for fluid retention, because I STILL have ongoing abdominal pain.  Because I don't know if the pain is scar tissue, digestive, missing omentum, or tumor, I want to do all I can to track my progress.  Tomorrow I see a dermatologist for skin screening.

Michael Douglas was diagnosed with "throat" cancer, stage IV, just a few weeks ago.  He also suffered through physician incompetence, missing the cancer in it's early stages while most likely to heal.  I feel bad for him and his family, and my prayers go out to them.  This is his first week of chemo and radiation, and seeming well on David Letterman, the general public has no idea how much he will suffer.  Chemo and radiation get more and more toxic with each dose.  I pray God stays with him and gives him the strength to tolerate the treatment regimine, to rid him of his cancer.  God Bless Micheal Douglas and his family.

Be Love

SEPTEMBER IS NATIONAL OVARIAN CANCER AWARENESS MONTH

http://www.ovariancancer.org/

With September being National Ovarian Cancer Awareness Month, I am hoping that you will be taking some time to become familiar with the symptoms and also checking with your gynecologist to make sure you are healthy.  Please ask your primary care physician and gynecologist to explain to you the symptamatology of OVC.  I ask this of you because you need a good doctor.  You need a doctor who knows the symptoms and who will take all your symptoms seriously, God forbid any occur.

No doctor's ego or intimidation is worth the sacrifice of your health!

I read daily posts from ovarian cancer survivors and those in treatment and all are suffering.  It is unbelievable to me how much long term suffering exists in the OVC survivor. We are strong women who didn't need to suffer.

We need more sophisticated screening for EVERY woman so that she remains free of this deadly disease.

Be the one to save yourself and be the one to save your female friends and family.  Spread the word and learn about OVC. 

Be Love,
Denise

neulasta for life

Had a great visit with my hematologist yesterday at the cancer center.  He asked me an odd question "doesn't coming here give you anxiety?".  He was telling me that most patients don't like to return to the cancer center after they have finished their chemo.  I told him that the cancer center feels like home to me, they saved my life.  I can understand why patients would not want to be reminded of their pain.

I want them to know that they helped me, I want them to see me smiling with gratitude.  I want them to know that they matter.

I will have to take neulasta shots for the rest of my life.  Drag.  After two months of weekly lab tests, there is no cyclic neutropenia, no lymphoma (Thank God), and no solution other than neulasta.  Neulasta costs $7K per injection.  Fun.

Anyway, I can't avoid it, because my WBC/neutrophils get so low that my life is threatened because of possible infections.  My doctor said he may try to help me with the cost by doing what he can to negotiate with the powers that be and see if I can get a cost break.  

I am very grateful to him for his efforts.  I had been dealing with low counts for years, with multiple hematologists literally stupified by my situation, and now I have an answer.

My JRA has beaten my immune system to a pulp and my bone marrow no longer wants to produce neutrophils.  Maybe I would be a transplant candidate.......forgot to ask about that. 

Anyway, so I have a lot of bone pain today (side effect of neulasta), but I'm protected for a few weeks.  Yay!  

On a side note, I'm making friends with the local neighborhood cats.  All the neighbors have indoor/outdoor cats.  They are coming around and I get to play with them.  I love that!  Just love it.

Be Love

Cre'me Brulee

Well, per doctors orders, I am eating less fiber.  So instead of a nice soup or salmon with veggies, I had Cre'me Brulee for lunch with peppermint tea.  My mom and I went to a local little lunchhouse called "The Barking Dog".  It's actually within walking distance.  Met a nice older guy named John who chatted with us a bit.  Mom had halibut and salad, with some white wine (gosh I wish I could have alcohol at least once). 

Lunch was grand, and after the lorazepam, queasy pop and extra omeprazole, I think I was OK to eat.  Life is fun.

It was nice to chat with mom about this and that, watching people walk their dogs, talk about things other than our illnesses and worries.  It was a good day.  Thank you God.

Be Love

back to chemo side effects

I was really hoping to blog about my dreams, but I'm dealing with another episode of vomiting.  Last night (Monday) I got very sick AGAIN!  I had accidently eaten a chips ahoy cookie with peanut butter, and a few hours later, goodbye dinner.  I know...gross.  But this is really getting me down.  This is the dialogue of my life..............................................................I'd rather be talking about dancing or the latest movie I saw, or a trip to the beach or whatever.

The SCCA oncology nurse called me this morning (they are so good) and I told her about last Thursday and last night.  Good news is that she said I eat a very healthy diet, good fiber and nutrition.  Bad news is that if this is intermittent bowel blockages, I will need to eat less fiber and more processed foods........I'm confewzed!  Processed foods can increase cancer risk...........I don't want to change my diet.  I will follow her orders for now, just to see if it makes a difference.

So my instructions are to tone down the fiber, drink lots of fluids, and wait for my upcoming CT scan.  She wasn't keen on my problem being a peanut allergy, and I think it is.  But who the hecka knows.

All I do know is that for the rest of my life I may be dealing with abrupt episodes of vomiting, and how will I live any normal kind of life in that condition????

It makes me afraid to leave the house or plan a trip or go on a plane or long drive or crowded event or anything.  I really need to reach out and find out if this is a common problem.

The SCCA nurse said that this blockage problem is a side effect of chemo, and that I will need to meet again with a nutritionist and be instructed on how to cope with this problem long term.  I read that as "there's no cure" and I'm bummed. 

I know I will get better at coping with this.  I have a sweet niece who has migrains (she's 10) and she always has vomiting episodes when she has a migrain.  If she can handle it, I can handle it. 

So my plan today is to see how I feel, and hopefully I will be able to take a walk later in the day.  We will only have two warm Seattle days this week, the rest of the time the temperature will be in the 60's.  Yuck.

So, it's beautiful and I am going to do everything I can to enjoy fresh air, blue sky, the chance to just be here and exist in peace.  I am glad that I don't Have to be anywhere today other than to go get a prescription. 

These episodes wear me out a bit.  I plan to rest most of the day, say some prayers, and count my blessings.

Be Love.

movie with Ewan McGregor

So to make things even stranger, I came home from housesitting and found my netflix movie on the table.  It was the latest one with Ewan McGregor, "Men who stare at goats".  How weird is that?  I had totally forgotten that movie was on the waiting list, and really had no idea what it was about.

Just wanted to mention it.  It's a funny movie, by the way.  They talked about cancer in the movie though...........

Be Love

vivid dreams about Ewan McGregor

Don't ask me why, but I had a very very odd and intense dream last night about Ewan McGregor.  He told me that he has cancer, stage IV.  It was the weirdest thing and I pray to God that it is not true.  I was part of a group of people who were playing a game.  The game was like a play, a musical, but also like a sport.  Sort of like being a dramatist, mime slash musician slash dancer competing to win "something" in a time similar to "waterworld".  We were competing as a pair, and he started crying, held me and said he had cancer.  He started shaking his head side to side in denial and it was awful.  I wanted to comfort him and take his pain away.  This went on and on in my head in loops of variations of the same message, over and over.  Why Ewan McGregor and why cancer?

I got violently ill again Thursday evening, and today I still feel nausea and fatigue, but am grateful the episode is over.  I have been housesitting, taking care of kitty, garden, mail etc.  It's all I can do right now to get ready to go back home. 

Maybe the dream is a result of the extra Lorazapam I had to take for my nausea.

The thing is I have always adored Ewan McGregor.  He's a doll, and such a wonderful actor. 

I have been having vivid dreams all week.  Maybe I'll start putting them in my blog and see what happens.  My family is pushing me to get my life together and "get a job" etc.  Well, I am trying here.

Who is going to hire someone who may or may not be able to show up from day to day.  I pray to God for a work from home purpose.  I pray that it comes, and I will seek that form of income.  I can't afford to live in Seattle on disability.  It won't work..........things will be OK.

In the mean time, my dreams may be a way to sort out my frustrations and worries, so let's see what happens tonight.

Be Love.

Missing an Ovarian Cancer Diagnosis Should Be Criminal

Missing an Ovarian Cancer Diagnosis Should Be Criminal

Trisha Torrey is a patient empowerment advocate. In this article, she quotes me! I am so thrilled to know that there are other women out there who really see the crime in allowing undiagnosed ovarian cancer to persist. Thank you Trisha for your powerful presence. Thank you for listening to me. Denise Archuleta

sleeping in

I slept until 1pm today.  Not sure why, I guess I needed the rest.  I went to bed at 11pm, and fell asleep quite readily after reading some of the Bible.  I have gotten behind on my reading, bogged down a bit with worries.  I'm not supposed to worry as my life is truly in God's hands.

I received a letter from Dr. G saying she is comfortable with returning to work in October, pending progress with arthritis.  That made me feel a little more at ease, as I'm really not ready, but getting there.

Every day I work on building up my strength and endurance, so that I can actually do meaningful work.  I still don't know though what it will be.  I didn't call the "Ticket to Work" organization yet, I need to do that next week.  I am procrastinating.  I feel totally stuck.  I think it's because I really just want to be involved in advocacy or have my own little business.   Lord help me figure this out.

Lord please also help my mom.  She has nausea all the time.  Our summers here in Seattle are short.  She is missing the moment.  I love her so.  I love my family. 

Tomorrow I get to enjoy the Blue Angels show with Mandy, Patrick, Laria and Addie.  Hopefully mom will be able to go.  It will be so so nice to laugh and smile, in spite of the rain.

Be Love,
Denise

My second Birthday

On this date at this time last year I was lying in a hospital room after major surgery to remove cancer.  I had a total abdominal hysterectomy, appendectomy, removal of my omentum and lymphnodes, as well as some smaller tumors along the peritoneal cavity.  I was "optimally debulked" according to those in the gyn-oc community.  According to my mother and aunt, my surgeon was beaming with joy at the results.  He said it couldn't have been any better.  The next phase, chemotherapy in 4-6 weeks.

I had to move to Seattle for chemo, which I completed the end of February.  My next CT scan is in about 3 weeks, along with another CA125 blood test.  Now that there is no evidence of the cancer, I am on lifelong survielance, because the recurrance rate is about 70% for my type of cancer, Stage IIIC.

Today I have the luxury of being with my family, to be exact I am sitting in my sister and husband's beautiful home.  I also got to enjoy a nice movie with mom earlier today.  As far as "second" birthdays go, its been pretty good.

A year ago I couldn't even roll side to side, I had staples from my breastbone to all the way down "there".   For several weeks I needed help in and out of bed, my aunt and sister had to stay with me because I couldn't take care of myself.  I was in so much pain, so much pain.  The narcotics made me constipated and it just gets worse from there.  Recovering from the surgery was a real challenge, but I did it.

Once chemo started, I had a whole new set of problems.  Unexpected visits to the emergency room, nausea beyond belief, severe abdominal pain still.................total loss of concentration and unbelievable fatigue.  It was hard just to watch TV or check my email sometimes.  Once chemo ended, the residual effects lingered on and on.

To this day I get nauseous every day, but just a little.  ( I have to take methotrexate for rheumatoid arthritis, and nausea can be a side effect).

Now I can walk around the lake, which is a big WOW for me.  It's not a power walk or anything, but it's a walk.  I need to get stronger.  Strange though, because I have no omentum, everything jiggles, and it "hurts" if I bounce too much, but I try.  That will never go away, so I have to deal with it.

I can concentrate now, and don't have that severe abdominal pain any more.  What I do have now though is an extreme fear of getting super nauseous and winding up in the ER.  I had severe vomiting episodes after chemo ended, and the cause was never determined.  I am very careful to take anti-emetics before I exercise.

I am still so lost though, and I need to resume some sort of work someday.  I cannot imagine a full time job but I can imagine a part time job. 

I apologize that this post has been more about my body than anything, but unfortunately that is where my focus has been.  I went to church last Saturday for the first time since May (when I got severely nauseous).  I met with the priest and it felt so good to confess my anger.  I need to rebuild my spiritual self and find my place in this world.  My place to provide good will, and I'm working on that.

My family and friends are the most important people in my life.  They got me through this episode and dark period in time.  They are supportive, but I know they don't want me lying around the house on disability doing "nothing" with my life.  Neither do I.

Having a chronic disability (arthritis) and cancer history make job hunting a real challenge.  To be honest, I love life and treat each day as a gift but I'd be lying if I said that the 70% recurrence rate didn't worry me.  It does, it clouds me. 

I want to get retrained with the "ticket to work" program, but for what.  So I live my life check up to check up.  It would be so MUCH easier if I already had a job to return to.  The cancer center is offering a "cancer and careers" workshop in August, which I will attend.  Truthfully, I wish I had my own little business.  Just a little something I did at my own pace that made me just enough to pay bills. 

As my physical self gets stronger and more able, my mental state improves because my confidence improves.  Still need to get to Gilda's Club. 

I am a thousand percent better today than I was this time last year.  I thank God for surrounding me with a very very very loving family that reached out to support me and help me when I was unable to help myself.  I thank Him for sending me good friends who really cared and took care of me during dark days.  My mother, aunt and uncle, sister and her husband, and brother really really really bent over over backwards to get me the resources I needed.  I would not have survived without them.  I also thank God for my surgeon and oncologist, who saved my life, literally.  I am blessed.

So tomorrow is a new day, another chance to make a difference, be a friend, and be Love.

Denise 

A prayer for those with cancer

Oh Saint Peregrine, you have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you (names of those for whom you are praying, including yourself).  Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy.  Amen.

Sleeping

I still sleep 11 to 12 hours per day, no matter what time I go to bed.  No matter

what I do the day before.  I wonder if my medications cause me to be so

sleepy or if I'm still depressed.

This is a concern because eventually I need to really live a life that has some sense of normalcy.  Maybe "normal" isn't what I need to strive for.  In the world of my imagination I see myself running a non-profit organization that helps women blindsided by ovarian cancer.  In another world I do good deeds for the homeless. 

In another world, I make pottery and sell it on etsy, donating a portion to

ovarian cancer research.

I wonder if I will ever live alone again or have my own apartment.  I guess that is not really important. I really enjoy being with mom, even on our "bad" days. 

 I sometimes think she tires of me. 

Whatever I do in the future, I can't be sleeping 12 hours per day. 

I am still very anxious about being in large crowds because of my neutropenia.  Yesterday my sister's girls participated in a karate demonstration at a Seattle event called "Bite of Seattle".  I really wanted to go, but my WBC is low and I should be getting a shot for that this coming week.  Plus, I have this huge fear of getting severe nausea and vomiting still. 

I hope I'm not turning into a basket case.

I did speak with a kind woman from Cancer Lifeline (local support organization) last week.  She invited me into the center to take a tour.  I'm moving at a snail's pace on reaching out for support, but it feels right to me.  I must be driving my sister nuts, she is really pro-active and doesn't waste time. 

 I love her so much.

Anyway, I need to find a way to get up each day by 8am.  That is my short term goal for this week.  Let's see if by the end of the week I can awaken at a normal hour.  

Be Love,

Denise 

forgiveness

I have been relishing in the warm weather, joyfully awaiting each day knowing that I can actually walk outside and be comfortable.  Seattle's summer is short.  We have a small window of opportunity to do what we want in order to feel "satisfied" before the tiring rains begin again.  There is little time to worry or wonder about regrets or postpone plans.

That is sort of what I feel in terms of my well being.  I don't want to live my days with regrets, unanswered calls, forgotten business, unresolved matters of the heart and will, issues with the past etc.  Yet each day I am faced with an opportunity to do something to resolve some thing.

I opened my mouth today and accidently revealed something that was not supposed to be said to another.  The mistake was truly a mistake, I was not aware that this condition existed and now I feel bad.  The problem is that this one incident is part of a larger festering unresolved conflict that involves a group of people I love dearly, and we are all involved.  It's a matter of long standing problems that have caused immeasurable pain for others, and there seems to be no resolution.  It is simply a painful situation, and my heart breaks because I want to wave a magic wand to make it go away.  I want to turn back the clock and do things differently.  I want to fix it. I can't.  It hurts.

So I apologized for making my mistake and I apologize again. 

So how and why do we continue to live our days knowing that we have unresolved conflicts, pain and anger, nestled in each fiber of our being?  Why can't we just fix our lives?  Why can't we instantly forgive and forget, let people be who they are and have no expectations.  I don't know but if we lived our lives by only loving one another we would all be happier. 

I will continue to make right my wrongs as best I can until I die.  I have had a brush with death, just enough to appreciate forgiveness and love.  I have to work hard each day to be what I preach, so to speak.I am far from the best example. I will pray for all I love to live a life of love.

Be Love